Childhood Heart Disease & Congenital Heart Defects

Main Types of Heart Disease in Children

Congenital Heart Disease 

Congenital heart disease refers to when an issue occurs during the development of the heart and a child is then born with a heart abnormality. Some people refer to this as a “heart condition”. Approximately 1 in 100 babies are born with a congenital heart condition. Common congenital heart conditions are due to issues with the valves in the heart, holes in the heart which can result in abnormal blood flow to the lungs or body, or low oxygen levels sometimes referred to as a “blue baby”. There may also be abnormalities or weak heart muscle or an abnormal electrical system. 

Simple Congenital Heart Disease

• Isolated secundum atrial septal defect (ASD)
• Isolated ventricular septal defect (VSD)
• Mild pulmonary stenosis
• Patent ductus arteriosus (PDA)
• Isolated aortic valve disease (such as bicuspid aortic valve)
• Isolated mitral valve disease
• Isolated patent foramen ovale (PFO)
• Vascular Ring

Moderately Complex Congenital Heart Disease

• Anomalous left coronary artery from pulmonary artery (ALCAPA)
• Anomalous aortic origin of coronary artery
• Anomalous pulmonary venous return (TAPVR or PAPVR)
• Atrioventricular septal defect (AVSD), also known as AV canal
• Coarctation of the aorta
• Ebstein’s anomaly of the tricuspid valve
• Moderate-severe pulmonary valve stenosis
• Sinus of Valsalva fistula/aneurysm
• Subvalvar or supravalvar aortic stenosis
• Tetralogy of Fallot

Highly Complex Congenital Heart Disease

• Congenitally corrected transposition of the great arteries (ccTGA or L-TGA)
• Heterotaxy
• Mitral atresia
• Pulmonary hypertension
• Shone’s syndrome
• Single ventricle
• Hypoplastic left heart syndrome (HLHS)
• Hypoplastic right heart syndrome (HRHS)
• Tricuspid atresia (TA)
• Pulmonary atresia (PA)
• Double inlet left ventricle (DILV)
• Double outlet right ventricle (DORV)
• Transposition of the great arteries (d-TGA)
• Truncus arteriosus

Any person who has undergone any of the following procedures are considered highly complex: 

• Arterial switch procedure
• Blalock-Thomas-Taussig Shunt (BTTs) previously known as the Blalock-Taussig or BT Shunt
• Double-switch procedure
• Fontan procedure
• Mustard or Senning procedure
• Norwood procedure
• Rastelli procedure
• Ventricular assist device (VAD)

Acquired Heart Disease

Acquired heart disease refers to when a heart problem develops after birth. Acquired heart conditions include rheumatic fever, Kawasaki disease, coronary artery disease and trauma.

Signs & Symptoms of a Heart Condition in a Child

While this can vary with each child, some of the symptoms of a cardiac abnormality include:

• Infants & Toddlers
• Poor growth
• Shortness of breath
• Cyanosis (blue discoloration of the skin)
• Shock
• Abnormal heart murmur
• Children & Adolescents
• Palpitations
• Exercise intolerance
• Syncope (passing out)
• Dizziness

Diagnosis of Heart Conditions in Children

Heart conditions can be diagnosed as early in utero and as late as into adulthood. Abnormalities may be detected by a cardiologist during a physical examination and confirmed via one of the following tests:

• Electrocardiogram (EKG): A cardiac imaging test that can detect electrical abnormalities.
• Chest x-ray: An imaging test that screens for an enlarged heart, signs of heart muscle failure and certain congenital abnormalities
• Echocardiogram: A cardiac imaging test that uses sound waves to create images of the heart structure and function. The images may show a hole in the wall of the heart or an abnormal valve or a weak muscle. A fetal echocardiogram may be recommended after an abnormality is suspected during routine OB monitoring.
• Cardiac catheterization: A specialized procedure that may be necessary to determine the structural problem. This technique also allows measurement of the pressures in the heart chambers and of valve function. It is more commonly used to intervene and open up valves, close or make holes in the heart, or place stents to keep vessels open (see below).

Treatment of Heart Conditions in Children

Treatment is dependent on several factors including the specific diagnosis and the physiology of the patient, among others. The conditions mentioned above typically require surgery or an interventional procedure. At Lurie Children’s, our Heart Center team individualizes treatment plans based on each patient’s needs.

Long-Term Outlook for Children with Cardiac Care

Cardiac care has significantly evolved over the past several decades. Many children with heart disease are now living well into adulthood due to clinical advancements and research, including:

• Genetics: Care teams now have better insight into the genetics of heart disease and development of the heart.
• Diagnostics: Echocardiogram capabilities have improved over time, allowing care teams to detect heart conditions and develop treatment plans earlier.
• Interventional Cardiac Catheterization: Capabilities of cardiac catheterization have grown, providing more treatment options to patients.
• Treatment of Heart Failure: In addition to evolving therapies and medicines, the growing use of ventricular assist devices allows for additional support for patients with heart failure.
• Data sharing: Evidence-based medicine has evolved in the last 20 years thanks to collective information sharing with institutions across the country. This allows care teams to keep up with scientific findings and strengthen clinical best practices.
• Cardiac intensive care: Leading care teams now include dedicated cardiac intensivists, physicians specially trained in pediatric cardiac intensive care that treat children with complex congenital and acquired heart defects. This specialized focus is key to improving overall outcomes. 
• Neurodevelopmental Care: Clinicians now have a better understanding of neurodevelopment in children and, specifically, how it impacts patients with heart disease. Thanks to growing evidence, children with heart disease are now started on interventions during earlier stages in life which provides them the best chance at improving future outcomes. Learn more about our NICU-Cardiac Neurodevelopmental Program.
• Adult Congenital Heart Disease (ACHD): Advances in pediatric cardiology means many children are now living well into adulthood. We continue to support our patients across their entire lifespan when they seamlessly transition into our integrated ACHD program. Our ACHD team is specially trained to care for adults with congenital heart disease. Learn more about the Adult Congenital Heart Disease Program at Lurie Children's. 

Why Choose Lurie Children’s for Cardiac Care?

Pediatric heart conditions vary greatly, but our expertise wraps around all of them. We treat children from before birth through adulthood and are known for:

• Leading heart care: As a top-ranked pediatric heart center by U.S. News & World Report, we treat all pediatric heart conditions, including the most complex conditions that require surgery.
• High patient volume: Our pediatric heart surgeons perform 450+ surgeries every year and our cardiologists treat more than 17,000 children each year.
• Ability to offer heart transplants: We are the only pediatric program in Illinois to have a heart transplant program. We average about 30 heart transplants a year.
• Dedicated cardiac ICU: In our 44-bed Regenstein Cardiac Care Unit, cardiology attending physicians are available 24/7. This means the most senior expert is always there.
• Access to latest devices: Through participation in clinical trials, we have access to the latest devices, such as heart valves. We are also an active cardiology research center.